Roman's SCID medical fund

My son Roman was born on 12/8/17, he was diagnosed with SCID (Severe Combined Immune Deficency) there are many forms of SCID, the one Roman has is X-Linked SCID. This disease causes him to have no immune system, in his case no T cells, T cells are responsible for fighting off infections and viruses. A simple cold to someone with a full functioning immune system can be nothing but to a child with SCID it can be fatal. Lucky for Roman he was born in one of the states to provide new born screening test and they were able to detected it early, so he was able to go straight to Childrens Hospital in Los Angeles and put in isolation to protect him until he can receive treatment. As you can image me and his father were terrified to receive the news not knowing what this disease was. After learning more about this condition, it is as rare as 1 in 100,000 and usually passed down through a Gene, but in his case again it was rare enough that it was not passed down through a Gene, there was a mutation in his Gene. We were offered two treatments to choose from: The traditional Bone Marrow Transplant that is typically used for this disease or Gene Therapy which is a newer study that was created for this disease. Bone Marrow Transplants have been treating SCID since 1968 but runs the risk of Graph vs Host, which is a very scary risk and also requires a lot of Chemo, Chemo alone has its own risks.The best possible situation for his bone marrow transplant to be successful was to have a match from his brother or sister but unfortunately neither of his siblings were a match,  they also tried checking through the national registry of donors but did not turn up a single match, so last option was to have myself or dad be a half match donor. But we had found out that Roman had some NK cells present which usually are not there with this disease, which made his case even rarer, being that they were there would have meant even more chemo to kill them to make the space needed for the transplant. After talking to some doctors, they have seen some cases where the transplant did not engraph because of the NK cells being there so they rejected the donor. We decided that Bone Marrow Transplant was not the best treatment for Roman. We left to San Francisco to have Roman be apart of a Clinical Trial that is specific to his disease X-Linked SCID. Roman is the 8th patient to under go this specific Gene Therapy in the U.S. , there is no risk of Graph vs Host because they will use his own cells not a donor, and they will only use the amount of chemo appropriate to his age,weight and height. He will be followed with this study over the coarse of his life and we are hopeful that this will be ground breaking and can help future kids with SCID.On February 12th, 2018, he went through the first part of his treatment, they took bone marrow out and sent the blood to St. Jude's hospital where they will correct the Gene( Genetically modify) and send it back to re insert. He will need to get some conditioning (chemo) twice before they are ready to insert the cells back in. Then from there they will check blood work to see if month to week to see if his cells start growing. Once they start growing in numbers they will test to see that they function and can do there job. There is no long term studies for this trial, but the oldest child to receive this treatment is 4 years old now and and seems to be living a normal life.  It will be a waiting game for his cells to come in and start functioning. Roman's life is very different from all other children, he has to live a certain way in order to save his life. For the first two months of him being born, we had to wear mask and gloves before touching him, he has not been able to physically be around his brother or sister let alone any family members to keep him safe and not exposed to any viruses or sicknesses. This has been extremely hard on my other two childern to have there new born brother taken away within a week of being born, they are learning to understand what is going on. Roman has been isolated in a hospital room since he was 10 days old, he will not be able to leave the room until he is better. All doctors and nurses that enter the room must sanitize there hands, gown up and put mask and gloves. He has to bathe and have diaper changes in sterile water, he has his room cleaned every day, and his items wiped down, he takes a few medications a day to help prevent certain viruses, he receives IVIG treatment that give him antibodies to also try and help, his vitals are taken every 4-6 hours to monitor any changes. Every day he is seen by 6-8 doctors a day. Myself and my husband are now able to handle him with no gloves or mask but can't even kiss him, which is very hard. My husband will be with Roman in San Francisco for 5 months +, until he can build some of an immune system and be off isolation. I had to come back home which is 8 hours away from San Francisco to go back to work and take care of my other 2 children, and I will drive/fly to San Francisco from Hemet when I can be off of work. It will take a long time for him to build a full functioning immune system. Roman will be discharged with a certain level of cells. But in Romans case he is the only baby under this Gene therapy here at UCSF to have siblings which gives him more of a chance of getting sick when he goes home, so we will all need to adapt to how we will live for awhile. When he comes home will not be able to go anywhere with crowds, if he goes to the store it has to be around a time that not a lot of people will be there, he will also need to have a clear plastic rain type covering over his stroller/car seat to protect him from germs/viruses. At home things will need to be properly sanitized daily and things like a hepafilter will help to keep him in a sterile environment. We also had to get rid of most of our furniture and need to start new before Roman can come home, to keep things more minimal and things that are easier to sanitize daily. Funds help towards items that will be needed in the house to make a more sterile environment and to help with travel expenses and medical expenses. Thank you for reading this and any help will be deeply appreciated. God Bless Savanna & Paul